Down syndrome


#21

Hey monicad, no problem. Just to let you know, half the reason Pete talked the way he did was becuase he was an inner-city black man. I’m not sure the basketball team spoke much more intelligibly than he did. But I wanted to write like he spoke beucase thats how he was to me. I’m sorry if it came off as babyish.

And as an employer I’ve been witness to meltdowns and tandrums, again, its nothing compared to what parents face. At this point, I felt the OP didn’t seem to need to hear anything frustrating…only that her child will be loved, wanted and valued by some of us in society…and that she can mourn the loss of her dreams. Most parents of 5mo’s don’t want to hear that their child will have tantrums and make their life miserable. :wink: And yes, there is alot of daily life where a kid is just a kid and a family is just a family.

As a note, I work with a variety of handicaps, some mixed…and I make it a point to NEVER ask their specific diagnosis, only to what their IEP contains so I can help them improve. And with that note, I ask my student employees what their career goals are, even if they are hired to “just” put something on the shelf.

I would be completely offended, too, if someone told me it was good I was training these kids so they could do . What I teach them is NEVER about job skills but about learning and improving themselves.

One of the hardest things is looking in the face of “Ken” when he sees me drive my car. He will never be able to drive but he wants it so badly. His little sister (younger by 5 years) will be driving independently soon. It kills him. But it also kills my friend who’s my age and has something-or-other epilepsy that makes it impossible for her to drive…even though she was “average” in every way she faces the same frustrations.

Society gives us this laundry list of accomplishments that we’re supposed to perfect, or else we’re defective. And as a college graduate with dyslexia and a hearing issue, I know how disparaging some teachers can be. I’ve had college math profs take off points for spelling errors becuase they felt it was their “job” even though they knew I struggled with it, becuase they deemed I was being lazy. I had them refuse to let me use a voice recorder becuase if “I didn’t listen hard enough then I shouldn’t be in the classroom.” It affects my social life, my job and even my religious outlook. And those are just with minor disabilities.

and ps. If you look at some of the threads many catholic singles have had no luck finding someone into their 30’s, 40’s and 50’s and most don’t have any impairments.:blush:


#22

I don’t have a child with Down’s Syndrome, but I can imagine that after being told of the condition I would be worried about raising him/her. I would imagine I’d feel my child somehow was shortchanged in life. I’d bet I’d worry about finding the resources, strength, faith, and energy it would take to raise him/her.

But I don’t see children with Down’s Syndrome like that. I know only a handful, but they are the most beautiful people I’ve ever met. I know they’ve taught more people more about life and love than the most intelligent person in the world could ever hope to. So I guess I don’t know if having Down’s Syndrome is a gift for the child - but it certainly is for the rest of us.


#23

But…since that happened very quickly after our boy’s birth, we suppressed these feelings we had…the dreams we dreamt, the plans we made. We needed time to adjust, but weren’t allowed it. We were kinda forced, by peer pressure to smile and agree that we are so blessed and are very happy for this gift.
We needed that time.
The time needed can be different for every parent, but I can tell you that those feelings came bubbling up a few years later and it wasn’t pretty.

This happens to parents with “regular” children every day. They don’t live up to our dreams for them, or the plans we have for them. They ignore gifts they’re given and don’t use talents. They don’t live up to standards.

Parents with regular children also have painful adjustments to make. It just comes a little later in the game.

And I agree with the other poster. Being a “regular” or “non-disabled” person is no guarantee they won’t be lonely. But they may have a much keener sense of how lonely they really are than a disabled child.

Parenthood is parenthood.

And the only certainty we can have is that the words of Simeon to Our Blessed Mother also apply to all of us. “Your soul also a sword shall pierce.”

It’s just we all have a different sword.


#24

I am the mother of nine children, two with special needs. The experience of raising a special needs child is not at all the same as a normally developing child. The struggles of parents with special needs children is misunderstood and underestimated. I have found this to be true even within the Catholic Church. I know that God did not cause this suffering and that He will bring good out of it, but it is a daily struggle to care for these children. I am told often that I am special, but I am still human with human limitations. As Catholics, we are called to respond to suffering with compassion and charity.


#25

No, they’re not alike. I understand that. I’ve worked with special needs children. I don’t mean to come across as lacking in compassion at all.

I just know what I’ve heard and seen for years from parents of “normal” children who have caused untold pain by their own choices and behavior in ways that a “special needs” child never would. There are different levels of pain and disappointment in life. What hurts more? Giving birth to a beautiful baby and realizing it will never go to college? Or giving birth to a beautiful baby and 21 years later realizing it will never go to college because by its own free choice it got involved in drugs and ruined its ability to do so? So many different ways that parents are challenged. Same disappointment but without the malice.

It’s not a contest of pain.

And I’m in awe of your fortitude raising 9 children.


#26

Hello, friend,
My son has Down’s Syndrome, too. He is fourteen now. I wish you could meet him, It would set your heart at ease. Loving my son all these years has totally taught me that being a person of great worth is just in there. My whole sense of what makes a person beautiful and lovable has opened into the truth.

When my son was a baby I begged God to heal him, but now I know everybody carries a cross just as heavy. His just shows.

Peace be yours!

Linda Mary


#27

I just had a thought cross my mind moments ago that I want to share. I have another thread up about being “Married to a Christian Scientist”. Before my son was born the thing I prayed the most for was for my wife to join me in Church and become Catholic. I wonder if God gave us our son so that he would help to convert my wife to Catholicism. After all, here in Chicago we have Misericordia (a Catholic, independent gated community for people with disabilities), and the Knights of Columbus (which I am a member) does alot of fund raising for Down syndrome groups. There is no group, that I can think of, that does more for people with disabilities than the Catholic church. I think my son was an answer to my prayer and a blessing at the same time. Is that too selfish a thought? Maybe that’s not why he is here! In time, I will find out…

Thank you everyone for the prayers, advice, and thoughts!


#28

This is a classic example of how the church diminishes things and brainwash people, us included. This is exactly what I mentioned happened to us right after our son’s birth.
What you, and many, many others fail to understand is that there IS a grieving period needed. There is an adjustment period needed. But, unfortunately, like in most areas of life when things get tough, catholics fall back on the age old “It’s all in god’s plan. Accept it and move on” line.
They don’t realize that it’s not that simple, all kids are not created equal and you can’t council the parents of special needs ids the same as other kids. But, try telling them that…it’s a brick wall.

No, they’re not alike. I understand that. I’ve worked with special needs children. I don’t mean to come across as lacking in compassion at all.

I just know what I’ve heard and seen for years from parents of “normal” children who have caused untold pain by their own choices and behavior in ways that a “special needs” child never would. There are different levels of pain and disappointment in life. What hurts more? Giving birth to a beautiful baby and realizing it will never go to college? Or giving birth to a beautiful baby and 21 years later realizing it will never go to college because by its own free choice it got involved in drugs and ruined its ability to do so? So many different ways that parents are challenged. Same disappointment but without the malice.

[quote]

I understand that you didn’t mean it maliciously, but the point of view is there and it’s not entirely correct. And parents should be allowed to deal with it at their own time otherwise it will

manifest late on and it ain’t pretty.
[/quote]


#29

I’m not minimizing it at all.

How do I say this… I think parents of special needs kids need a grieving time. But keep in mind it’s not all roses on the other side of the fence.

To put it bluntly, a special needs child will never cut your heart out with quite the same level of ingratitude as the so-called “perfect” child. They won’t accept a lifetime of sacrifice and financial largesse and then tell you how you “ruined their life” and list all your faults and failings as they slam the door on their way out. There are many parents who read this who have the so-called “perfect” children who have been devastated in ways that special needs kids will never be capable of. Your special needs child will probably not fall in with drug dealers and rot its brain on meth. Or go shack up with a complete loser and prefer to sin with him than live with the parents who love her. Or sneak around with bad friends at 3 am. Or steal from you. Or get drunk/high and drive a car into a wall and kill their friends. All of which you can find in a perusal of your local newspaper or reading this website as parents of the so-called “perfect” children come here with their hearts in their stomachs seeking understanding or help or advice.

I merely was trying to remind such parents of special needs that there are different kinds of parental anguish and maybe the cross they are asked to bear is painful, but the grass isn’t greener. And God does give special graces to the parents of these special children.

I’m sorry you feel the Catholic Church brainwashes people. I grew up hearing about the dignity of every individual and that God indeed had a plan for us that is better and more suited to our needs than we know. You can accept God’s plan or not. I don’t know what your alternative is to accepting that God chose you as parents for this child. Do you think it was a vast accident of the universe? That God made a mistake and baby should have been sent to the address next door? Do you think you aren’t supposed to accept it? Send the baby back? Rail at heaven for the next 40 years?

We ALL have things in our life that weren’t OUR plan, but we have had to keep going, whether life gave us time for grieving or not. What’s our choice? NOT to keep going? I’m sorry you think I was being mean when I was just trying to point out that the envy parents of special needs kids feel toward other families may be a bit misplaced in some instances. We ALL have crosses. We ALL suffer.


#30

When I see a family with a down’s syndrome child (or any special needs child), I say a special prayer…after all 91-93% of these babies are usually aborted…

I say a prayer of thanksgiving that the family brought the baby to term
I say a prayer for the child and family–that they have the grace and patience that they need
I say a prayer that those around them are touched by their selfless, loving act of accepting this special child, that it shows them the inherent dignity of EACH person, no matter their level of physical or cognitive ability

OP. please know that you have my prayers!


#31

Woah, what tangent are you on? Did I say that I’m unhappy with my son? Slow down there! Sheesh, It seems that I have struck a chord somewhere :slight_smile:

You took this issue way too far. We were speaking of the challenges, and not that we are unhappy with our children.

I think it’s the brainwash comment that you took out of context, if I had to wager a guess.

Slow down and breathe…


#32

Liberanosamalo,

Thank you for your perspective. As the mother of a young girl with Down syndrome and two typical children I would like to give you mine, and I would like to expand on and use what you wrote about “parents that come to this website with their hearts in their stomachs seeking understanding or help or advice” because I think it is a beautiful example.

I know we are all to trust in God and lean on him, but truth be told we are also a community of persons and naturally we often seek the warmth and comfort of our fellow Christians to help see us through hard times, just as you mentioned that heartbroken parents of children that are leading immoral lives often come here.

This is where I have found (in my life) a profound difference. I went to a friend or came to this website and mentioned that my typical child was on drugs or living immorally I beleive I would get sympathy, compassion, offers of charitable advice and prayers. However in my life when I have been sad because of my child with Down syndrome, the advice and the tone was often quite different. “we all have crosses to bear” “you were given this child for a reason” “you already have the grace you need.” are some examples.

In addition I wonder if the “grieving period” you mention is different then you think. The “grieving period” I beleive is sporadic and ongoing. I grieved when she was born but then was fine. Then again I grieved when she was not accepted into our Catholic school. I am truely happy most of the time, but to be honest I still grieve when I catch other children laughing and pointing at her and I still grieve when I hear people say things like “retard” and make fun of people with developmental disAbilities. Likely I might grieve at other times in my life too.

I don’t think the crosses in my life are any easier or harder then yours or anyone elses. As you mentioned we all have them. I only have observed that when it comes to my child with disAbilities I do not necessarily receive the degree of compassion that I receive from my Christian friends that I receive during other difficult trials in my life. The same individual that will console and comfort me during a trying time will tell me to “buck up” when I am sad because of my daughter. I am not bitter about this, actually I find it very interesting. It is something I have learned to deal with and have tried to lean on Christ and other parents of children with disAbilities when I need a shoulder to cry on. All the same it is something I have observed and wanted to share with you. Thanks and God bless.


#33

Thank you Monica. You said what I struggle to express. :thumbsup:


#34

Interesting perspective, Monica. I would bet money most people don’t even realize this is how they come across.

Maybe it’s because those who don’t have a disabled child have no idea what to say because they/we don’t have the same experience. So they try to relate it to something they can understand. But maybe it falls short. I don’t think it’s that people lack compassion. Sometimes people just don’t know what to say. They don’t want to just stand there in silence. They can’t say “Yeah, I know how you feel.” They want to reach out. But…

People can relate more to troubled misbehaving children because we all had friends and/or family experiences along that line.

We also all have those moments of sadness but for different reasons with our children.

Try finding sympathy when a child is ostracized because she’s “too smart” and some peers (girls! :eek: ) didn’t like how she always won the spelling bee in 2nd grade and pushed her down and kicked her in the head on the lunchroom floor. And then the teacher cancelled the spelling award for the class because your child always won.

Yeah, no one feels too sorry for you for that. But your child still comes home from school crying. It still hurt.

There are lots of milestones in my life I’ll grieve. Like my children watching my brother and his wife renew their vows. And I catch a tear in my daughter’s eye. And I know as she looks away it’s because she will never see her own parents renew their vows. No family anniversary parties. Graduations with splintered celebrations. No mommy and daddy dancing together at her wedding someday. No family vacations. But the world thinks I should have moved on by now and my 20th anniversary shouldn’t have been a sad day for me. The world is pretty sure how long it should be before you recover from a divorce. Even the people who haven’t had their families torn apart. My response to “Aren’t you glad he’s not in the house still.” is “Yeah,” but my children achieve milestones that I’m not even around for. I missed one daughter riding a two-wheeler for the first time. I miss days and weeks of their company. Different pain, but 1/2 the world can’t even comprehend it.

We all have a commonality in our humanity. I think we’re not taught to just say “I’m sorry you’re hurting. Is there anything I can do to help?” I’ve found that was always the best answer.


#35

Do you think perhaps this attitude is a, I can’t think of the correct word, backlash, pendulum swing, overreaction? There’s a word, and I can’t think of it! :banghead:, anyway, to the way parents of people w/ disabilities were treated in the past? Instead of “oh, you poor thing, having a “retarded” baby. What did you do to deserve this (maybe you drank or smoked?). Are you going to raise her? You’re not going to try to raise her, are you? Send her away so you can live your life and raise your other kids!” Which was totally aweful, obviously! So, now, we go too far in the other direction: “oh, you’re SO SPECIAL, to have God CHOOSE YOU to take of this BEAUTIFUL CHILD. Don’t you know how BLESSED you are???” Both extremes are wrong. Every child is a blessing, true, and Parenthood is a special calling no matter what. And people with disabilities are people…who happen to have disabilities, which can make life difficult (for the child and the parent), and a blessing (for the child and the parents). And “normal” children can make life difficult and a blessing. I don’t think parent’s of children w/ disabilities are martyrs or saints (on earth anyway!), but our society (not just the Church) has always had trouble with seeing and expressing things in moderation, especially when trying to make up for the “dark” past when we weren’t “enlightened” about things.

In Christ,

Ellen


#36

I live on BOTH sides of the fence with 7 normally developing children and 2 special needs children. Raising ALL children is full of joy and sorrow. But there are EXTRA challenges that parents experience when their children have special needs. It makes me sad that some Catholics will dismiss these struggles with “we all have crosses to bear.” Like Monicad, I have been ignored, dismissed, and yelled at because I expressed sorrow or concern about my special needs children. As Catholics who enjoy the fullness of the Faith, we are CALLED to respond with charity and compassion toward ALL people who suffer. This includes people, like Liberanolamalo, who struggle with divorce or addiction or whatever. God Bless! :slight_smile:


#37

When my daughter was diagnosed with Down Syndrome I was devastated. People consoled me the same way as the OP. I didn’t take offense at it, but I can understand how someone could. In fact, I sort of invited such comments. My mom asked me how I wanted her to break the news to the family. My response was, “Tell them that we are celebrating the birth of my daughter. Tell them that if they can’t call and congratulate me, not to call at call. Tell them we’re not mourning ANYTHING. Tell them that.” I guess that sort of attitude kind of invites the kind of comments that the OP was referring to.

My perspective hasn’t changed much. In fact, I look at my daughter with ADD, and I think of how there are very few of us who are “normal”. I have adult ADD. What was I saying? Just kidding. I also have carpal tunnel. I have chronic tennis elbow (even though I don’t play tennis). My wife has asthma. My mom has stomach problems. My mother-in-law is slowly going blind. My youngest brother has a heart murmur and flat feet (and is still a better basketball player than me!) So, what is normal? My DD w/ DS doesn’t have half the physical ailments I do. In that respect, she’s more normal than me!

A priest we recently met told me wife that she should be happy that she has at least one child she knows will get to heaven. Now there’s a happy thought!


#38

As I understand Church teachings, these things happen as a result of original sin.


#39

Yesterday I had the chance to visit a care home for mentally challenged adults. A very good friend of mine is a careworker there. I met 4 people there, then we went to another one of their homes, and I met several more people there. The homes were founded by a nun and are Catholic in perspective.

I was struck by the differences in personality of these people! One was a savant–she specifically asked me the date of my birth, & quickly told me that I had been born on a Thursday–which was right. There were some Down’s, some autistic, some mentally challenged in other ways…but ALL beloved by God!

Your child will change people–for the better. I firmly believe this. I will pray for you & your family!!! :love:


#40

original sin?

i really don’t get this. our daughter Naomi has special needs associated with down syndrome and she is full of grace. how can a person whose difference will likely render her remaining full of grace be considered a result of original sin?

she’s number ten for us. i don’t know why, really i don’t, but i’ve had very little grieving over her differences. once when she was tiny, i saw a local young man all dressed up beautifully, standing amongst other wedding guests at a nearby church. when i got alone, i did cry, because that young man has down syndrome. he was surrounded by a group of lovely young women, all talking with him, laughing chatting, and he would never be the love of any of their lives.

that was my single moment of grief-- deep, hard grief. and then it passed. it really passed. i didn’t have to talk myself down, re-decide or recommit. it just passed. that was a blessing from God, i know.

but the many countless moments of joy-- sheer joy-- in fact, by the end of her first week, Naomi had given herself the middle name joy because she is so much a Joy. the joy is uncountable-- even when she’s being a rascal-- loud, stubborn, insistent, whiney-- we still have a deep joy because of her.

i don’t know why i’m not more often sad. at first, my husband was. then he was healed of his “what shoulda mighta beens” and fell deeply in love with “who she really is.” we’re still in love with 'who she is becomming evey day."

but i know even struggling parents, sad parents, grieving parents LOVE their special needs kids. mostly parents grieve, NOT their lost dreams, instead they grieve for what the disability might mean for their child. most parents grieve unselfishly. they shouldn’t be treated as if their grieving was selfish. they shouldn’t be challenged to man up. they should, though, be listened to and helped to heal. not deny.

Naomi is 3 years old and still not walking. she’s close but not proficient. (you pray for her, OK?) she has some language, many signs, loves to say her prayers. she only knows poeple’s love. she’s not old enough to have experienced intentional meanness. even when people say not-so-helpful yet goodwill stuff like, “she doesn’t look like she has down syndrome.” or when people call her “a down syndrome child” (as opposed to “a child with special needs associated with down syndrome”) they are still doing so in an act of love and goodwill toward her.

if she’s ever scorned? i’ll grieve again, i’m sure.

is she special? yes. she’s special. and we’ve become special by our association with her. in fact, i never feel more loved by God than when I consider the astonishing gift he has given us in Naomi.

i have a son who’s a drug addict. he’s 24. the sorrow i’ve lived over that boy’s moral collapse, addiction, desperation and despair, and multiple disappearances weigh more than any sorrows of my life-- all combined and even multiplied. there’s nothing like that sadness.

what i see in him is not MY dreams shattered, but what I see in him are God’s dreams for him ignored, thwarted, rejected.

that’s the difference between my son and my daughter Naomi. he has rejected every perfect plan God has had for him (so far. i believe in miracles.) Naomi will NEVER reject God’s perfect plans for her.

if I had a hundred lifetimes to choose, i would not choose anything else than what God has chosen for Naomi. and what He has chosen for us in giveing Naomi to our family.

i know we have exactly the daughter God always planned for us (this is true for all our children-- ALL.). and she has the family God has always planned for her.


DISCLAIMER: The views and opinions expressed in these forums do not necessarily reflect those of Catholic Answers. For official apologetics resources please visit www.catholic.com.